The Lily Voelkel Foundation Mission is simple: Serve as advocates for children with CHARGE and those deafblind through targeted programs aimed at improving patient care in pediatric hospitals and at home by increasing awareness and focus while decreasing the burdens on families and medical professionals associated with the CHARGE lifestyle.
The lifestyle for those with CHARGE and their families is unlike any other. Christi and I have been inspired by other CHARGE families we have met with teenage CHARGE family members. Their drive, desire, and discipline is unmatched. We want to help serve as examples for others and also to try and help other families when and where appropriate. This journey is lonely and requires extraordinary levels of courage and determination.
Along the way we think it would be helpful if an organization existed to help these families. Our foundation will provide some of that help.
Specifically some of our focus will center on the following short term programs:
- Help parents with children suffering from chronic illnesses defray the costs of parking, meals, and hotel costs.
- Educational outreach to medical professionals by teaching and seminars designed to improve pediatric patient care in hospitals
- Make dreams come true for chronically ill children by providing otherwise unattainable access to local attractions, celebrities, and events
- Increase the number of opportunities for deaf blind and CHARGE children to learn through education outreach and access to resources
- Provide outlets and resources for parents of children with CHARGE to help them understand how to keep "balance" in their lives and those of CHARGE children siblings
Our vision is grand:
Create an organization that enables parents and medical professionals to take Charge of CHARGE .
Eventually create a CHARGE Center of Excellence in the Texas Medical Center, Houston Texas.
In the interim we will spend our energy trying to improve patient care, increase awareness surrounding deaf blindness and CHARGE, ease the burden on families in crisis in pediatric intensive care units, and most important serve as advocates for those without a voice regarding CHARGE and deaf blindness.
WHY WE CREATED THE FOUNDATION
The Lily Voelkel Foundation was created because of the love, courage, and strength of one little girl – Lily Korinne Voelkel. Little that is….only in size – but not in determination. Lily has defeated the odds time and time again. She has fought the myriad complications associated with CHARGE Syndrome and continues to battle new medical complications everyday.
The struggle has not only been for us as parents but also for Lily’s medical teams. There is not a large amount of research on CHARGE Syndrome, centers of research on CHARGE, or centers with specialists that know the disease.
It is our hope that through Lily’s Foundation we aid in changing that – not just for Lily – but for our entire CHARGE family. In addition to CHARGE, we want the ability to provide and educate more into the world of those deaf-blind. Ultimately, we want to fulfill a dream of a National CHARGE Center of Excellence based in the Texas Medical Center in Houston, Texas.
Another important facet of the Lily Voelkel Foundation is its parents – not only parents with CHARGE children – but those with medically complicated children. Throughout our two year journey, much of it has been spent in the hospital. During this time we have met many, many children and their families... all with the same scared look on their faces as they began their journey. We remember being in their shoes….feeling alone, not “knowing the ropes,” clueless as to what most of the medical jargon meant, and questioning what tomorrow would bring. Some of those feelings are still there, but for the most part, we have grown into our experience. We want to help others realize that they are not alone. We want to assist as many parents and children as possible during their darkest days. We have been through it many times and believe The Lily Voelkel Foundation will enable a sense of hope and light for those in need.
Through our Foundation we will provide assistance to such families and their children at our “home hospital” Children’s Memorial Hermann Hospital, Texas Medical Center in Houston, Texas. Designated funds (along with donation of time as well) will go to help the hospital’s Child Life department with necessities for the hospitalized child and quality of life items for child and family. Funds will also assist families with parking (quite burdensome), meal vouchers, hotel stipends and transportation. The days and nights are long and all these things can prove to be quite stressful and tasking for the families. In addition, some monies and time will be given to the Ronald McDonald house at Children’s Memorial Hermann and other charity organizations with missions dedicated to helping children in the NICU, PICU and Special Care.
And last but not least, the Lily Voelkel Foundation will create opportunities for support groups and communication venues for the medically challenged children, their families, and medical professionals. Ultimately the foundation will enable advocacy for those who don’t have a voice or the means to speak up and out to make a positive impact.
The possibilities are endless and there is so much to be done. The Lily Voelkel Foundation exists to make a difference – to leave a footprint in the medical discoveries of CHARGE Syndrome and in the lives of many children and their families experiencing similar hardships. It is a life of everyday miracles, but also one of many emotions and often one of fear and helplessness.
"Life is a miracle. Life is amazing if you seize opportunity…if you make meaning out of your experiences…if you grow, learn, and give back to others."
Please join us – make a difference! Help us take charge of CHARGE!